God is Bigger than Neuroblastoma

“Fear not, for I am with you…”

A lot of time has time has passed and I know many of you are wondering how Charlotte is doing. I have updated some on Charlotte’s Facebook page.

First of all, her last scans showed to be stable, Praise God!

As most of you know, Charlotte has had a cough for over a year now. We have been searching for answers. Talking and seeing multiple doctors. After Thanksgiving, we met with a pediatric pulmonologist. He briefly reviewed her scans from the past year and said she suffers from pulmonary fibrosis, scarring of the lung. I have noticed changes in her scans on her lung, almost every time. The oncologists and radiologists have always told us it was most likely inflammation from being sick. With time, we have learned that is not the case.

Most recently, after the new year, we met again with the pulmonologist and he said he closely reviewed Charlotte’s scans. After reviewing he has come to the conclusion that at least 50% of her right lung is damaged. Naturally, my hope is that as she grows, her lung will grow and it will break up the scarring. I shared this with the doctor and asked if it was possible. He informed me that there is a great chance her lung won’t grow and it is possible that the ribs that were radiated will lack in growth, possibly causing scoliosis later in her life.

Charlotte is now less than 35 lbs. She has always ranged between 38 and 39lbs. We are told that for Charlotte, just breathing is burning calories. I have been racking my brain, searching the internet, and reaching out to others on tips to help her gain weight.

She is currently on an inhaler twice a day, Albuterol nebulizer 3-4 times a day, a RT vest along with nebulized tonic saline, and an inhaler with albuterol as needed. They have also tracked her sleep which will now require a true sleep study.

Charlotte is exhausted! Simply walking from the car into the house tires her. Walking up or down the stairs, cause coughing fits and lack of oxygen.

Last week, Charlotte was sent home from school due to a pulse ox in the 80s. We had never seen it that low before. Then on Saturday, while at a friends birthday party, where Charlotte was simply painting, her pulse ox dropped into the 70’s. Poor girl could not breathe, and she becomes so frightened it’s heartbreaking to watch. We had to leave the party early and allow her to rest. Monday morning came and so did another attack. But this time her lips started to turn purple and her pulse ox was in the 60’s! I frantically called the doctor needing help. When Charlotte can’t breathe, it looks like she is choking. So automatically, I want to perform the Heimlich but obviously that wouldn’t help. They have decided to put Charlotte on oxygen throughout the night while she sleeps and as needed during the day when she drops below 90.

Putting the troubles aside, Charlotte has started gymnastics and ballet. At first, I hesitated, but I realized that I need to allow her to try and do these things. She loves both of these activities and will continue them until she feels like she can not. She is also excelling in school! My 5 year old is able to read, she adds, subtracts, and is beginning to count money. She can count by 2’s, 3’s, 5’s, and 10’s! She amazes me daily, I definitely don’t remember learning this stuff in Kindergarten.

Many people ask me how I am doing. Life is hard and I have definitely been struggling lately. Struggling as a mother, as a wife, socially, physically, and even in my faith. I know God’s plan is bigger and better than I will ever know or comprehend. I know he loves my baby girl more than I ever could. I find myself weak some days. Full of tears and WHYs?! Charlotte has endured so much, more than most adults do in a lifetime, in such a short time, when will it stop?! At times I am weak in trusting Him and satan is definitely taking advantage of it.

Charlotte will have a couple of scans on Friday. They have ordered a CT of her lung to check for any change. She will also have a PET scan to make sure that everything is still inactive.

Please pray for:

Charlotte’s lung

her to gain weight

strength for me

a safe trip to NYC

inactive cancer

relief and answers to her respiratory problems

complete healing

Charlotte’s miracle

Praising God for:

Charlotte’s desire to be active

support

a child that smiles through the pain

Charlotte’s faith

Charlotte’s miracle

The name of the Lord is a strong tower; The righteous runs into it and is safe. Proverbs 18:10

Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need. Hebrews 4:16

Committing to live by this verse:

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous hand. Isaiah 41:10

I want you and all of your family to know that I often remember you in my prayers. I am so blessed by seeing your faith, your trust, your Love for one another. Praying for God to meet Charlottes needs as they arise and for her to be able to be calm and peaceful in the midst of difficulty in her breathing. She is a real warrior! Praying our MIGHTY GOD will answer in powerful and unexpected ways.

We continue to lift you all up in prayer. You are the exact mother Charlotte and your other girls need. Your love, care, and devotion is so admirable. I pray you know how much you have influenced countless lives. We are praying for Charlotte, you and Tyler, your other girls and the hands that are helping Charlotte.

Love your family and your spirit, continue to give this huge burden to God, so much, so hard! He loves you all! Praying for the days ahead and wisdom as decisions are made on what to do next, and that the scans would reveal nothing else!

My heart breaks for you in your weariness and continuous battles. I will pray that, w/ others through prayer, we can be the Aaron and Hur in your life to hold up your arms during this long battle. I’m so sorry this has been your path.
I thank God that He has given Charlotte a reprieve from the cancer.
Love and Prayers

Hi there! I watch for your updates, and I thank you for taking the time.

I continue to lift Charlotte up in prayer as well as her entire family & all her medical staff. It’s ok to admit your struggles, even in keeping faith….I can definitely see why you might…..but the Lord knows all and he understands. He has a plan.

I started following your updates & blog a few years back when I worked with Laurel at St. Charles in Bend, and I fell in love with Charlotte’s smile in your photos. She has a smile that you can feel, even a stranger that is thousands of miles away….. You are doing a great job being her Mom.

I’ve never replied before, just read the updates, but something was telling me I needed to this time. I asked God to use me to help tell you something you needed to hear. So there you go! Haha, please remember to take time for yourself, because Charlotte needs you to. Please give her a hug for me. God is watching over, trust in that. 😊

I’m praying for Charlotte! My son was extremely underweight as a child and our pediatrician recommended Carnation instant breakfast 3x a day…that’s about 1000 calories. We also put powdered milk in the milk to bulk that up too.

Oh my goodness. When is it enough Lord Jesus? Charlotte and her family have endured and endured. Please Lord heal her cancer completely. Please Lord heal her lung. Please Lord give us that miracle. Thank you for listening to our hearts. Ask and you shall receive so that your joy may be full. We are asking. We all agree together that this miracle needs to happen. Jacqueline, please don’t lose heart. I know you are tired and understandably so. I would have collapsed a long time ago. You are an incredible woman with such a strong faith. That faith has been a light to so many people myself included. I refuse to give up. I know God is listening and He has a plan. I’ve never met you, but I love you and your sweet family with all my heart. I pray will continue to pray daily.

Your strength astounds me and your verses are so inspirational. What a great Mother you are, not only for Charlotte Grace, but for the other two as well. God absolutely has a plan for her. We will pray for you, Charlotte and your family. I hope she’s sleeping better with her oxygen. Like her Mother, Charlotte is a pillar of strength. May God Bless you all!!!!

All I can say is that God is great! I know he hears our prayers and all things come to pass in His timing. Something we do not understand nor comprehend. You have been amazingly strong through all this and it is because God has been holding your hand. Charlotte is truly blessed to have you as her mom. Your strength and faith has been an inspiration to many of us. Please hold tight to His hand. Continued prayers for you, Charlotte and your family.

Hi Jacqueline, I have felt so inadequate to give you a rely. Please know that we are praying for Charlotte and her healing. I am praying that God will continue to be with you each step, giving peace and wisdom. I pray that with each step you can hand over your responsibilities, hopes, and fears to Him. Love and hugs to each of you❤️

Jacqueline, my prayers continue for your beautiful Charlotte and for all these prayer needs you’ve presented to us…and most importantly presented to God. You have so much support around the country and no doubt around the globe as we await with expectant hearts with you for Charlotte’s miracle. And this too…Thank you for your transparency and honesty by sharing in your deepest pain, your own personal struggles and need for prayer. As you know full well, the enemy hates for believers to trust God. He wants us instead to trust our emotions of fear, worry, and doubt. But thankfully you’re a wise and devoted strong woman of faith who knows the power of prayer and of God’s Word…for even in your desperate hours of weariness and despair, you’re able to recognize the enemy’s schemes, return your focus to God, stay the course, continue to trust in Him and speak His Word….which is His Sword of protection. And in doing so you speak All to encouragement for ALL to hear, as you freely give from your own anguish and brokenness. God Bless You Jacqueline and your Beloved Charlotte and All your Dear Family. Stay strong! The God of angel armies is always by your side.🛡💜
“He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him.” Psalm 126:6